Thank you ALL for the thoughts and prayers for Logan while we've waited for the test results. We have felt your love! I did receive a phone call from the doctor this afternoon and she let me know that the sweat test Logan took yesterday came back normal! We are so happy! It doesn't matter how many times you are tested for the same thing and get the same normal results, it's still hard waiting for the "phone call". In the past 24 hours, I have learned alot about Cystic Fibrosis. I've received the kindest emails from countless people, one in particular touched me. Susan from The Homeroad has a daughter that has suffered from CF for 12 years.
This is the email I got yesterday from Susan:
"As a mother of a child with Cystic Fibrosis, I know exactly what you are going through.... had the test done (twice) when she was an infant. I'm praying that your son's results are negative but if not, I want you to know that I've got 12 years of experience with a Cystic Fibrosis child and I'll be happy to answer any questions you have. By the way, with all the advances in medications now CF children grow up with every chance for a long and happy life. :) (A little HOPE for the day). Thinking of you today."
This email was exactly what I needed yesterday! I shared the good news with Susan today that Logan's test came back normal and her email back to me read:
"YAY! I'm so happy for your family! CF sucks... there is no other way to say it. Luckily they have come such a long way in keeping these kids healthy. My daughter Kenley has to do a lot of treatments...Each day, she nebulizes several medicines, uses a vest that shakes her to loosen any mucus, takes pancreatic enzymes to digest every time she eats... it is a very difficult disease and I'm so glad your son is not going to be in "the club'".
I appreciated Susan's contact with me. After communicating with her, I decided that I wanted to know more about this thing called Cystic Fibrosis and more importantly, how can I help? Susan shared a great link with me that tells you everything you need to know about CF. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
"As a mother of a child with Cystic Fibrosis, I know exactly what you are going through.... had the test done (twice) when she was an infant. I'm praying that your son's results are negative but if not, I want you to know that I've got 12 years of experience with a Cystic Fibrosis child and I'll be happy to answer any questions you have. By the way, with all the advances in medications now CF children grow up with every chance for a long and happy life. :) (A little HOPE for the day). Thinking of you today."
This email was exactly what I needed yesterday! I shared the good news with Susan today that Logan's test came back normal and her email back to me read:
"YAY! I'm so happy for your family! CF sucks... there is no other way to say it. Luckily they have come such a long way in keeping these kids healthy. My daughter Kenley has to do a lot of treatments...Each day, she nebulizes several medicines, uses a vest that shakes her to loosen any mucus, takes pancreatic enzymes to digest every time she eats... it is a very difficult disease and I'm so glad your son is not going to be in "the club'".
I appreciated Susan's contact with me. After communicating with her, I decided that I wanted to know more about this thing called Cystic Fibrosis and more importantly, how can I help? Susan shared a great link with me that tells you everything you need to know about CF. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
HOW CAN WE HELP???
"Money buys science. Science buys life"
click HERE to donate!
or go HERE to get involved!
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Do you know someone who suffers from CF? I would love to know your story. Please comment below and share your blog link with us, so we can get to know you better. My thoughts and prayers are with everyone who is living with this horrible disease, and praying they find a cure SOON!! Thank you Susan for sharing your story with us!
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5 comments:
Great post! Thank you!
xo Susan
This is wonderful news. And thank you for wanting to get involved with the CF Foundation. My little girl as CF as well and are part of a Team Called "Team Audre". We do fundraisers all year around raising money for the foundation. Its so wonderful the amount of people that give up there time and/or money to help support in finding a Cure. I believe one day there will be a cure. And on that day were throwing a huge party :) Please feel free to follow http://sylloh.blogspot.com
I am new to following your blog.
As a heart transplant recipiant...I know the importance of educating those around us.
Thank you so much for sharing so much about CF.
So great!! Keep us posted on things we can do to help! You are wonderful!
One of my dear friends has a 2 year old girl (only 6 months older than my little girl) and a newborn son who both have CF. It's not fun, and more people need to know about it.I am lucky enough to have both of these mini people in my life, and thanks to the large amount of medicine they will always have to take I will get to see them both grow up. Thanks for the post, I have been looking for more information so I can be more aware when I am with my friend and her family.
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